When I was first diagnosed I spent a desperate few days on the phone believing that there MUST be an association of some kind. At one point I thought I was going to need to set one up and finally, I think through the Health Info Wales free number, I tracked them down. But seriously that was not the best way to spend my early recovery days and it was only that I was so sure they must exist that kept me persisting.
Comment 1: Where did you try? — i.e., where might it be useful for the RSIA to advertise? If we can collect a few suggestions, I’ll pass them on to the RSIA.
Comment 2: I was trying to remember – instinct tells me that I probably tried health authorities, community health council, occupational health places, oh yes HSE and RoSPA. The yellow pages was my main source, looking for anything to do with health, and I think it was the Health Information Service 0800 665544 that finally came up with it BUT they took forever looking up stuff to help, I have a horrible feeling that I was just lucky that the woman I spoke to happened to be enormously helpful and persistent. They definitely didn’t just have the information to hand. I think they would be the best place – they just need reminding that the association exists so that all phone operators there have the information to hand.
My main stumbling block I realise now was that I had never had access to the internet or anything till I changed jobs, although mainly American, the sites have been very informative. It is ironic that most help available is at the very place we shouldn’t be. The RSIA told me ages ago they were considering going online – did they change their mind? It makes sense that this group are somehow related to the association really – could they recommend us to people who ring – I know that having this e-mail contact with you all has been invaluable while trying to keep it all together at work, thanks.
Comment 3: This is likely to vary from area to area. The Health Information Service is really a number of different services, each one run by the Health Authority for the particular area. So some will be more clued up about RSI than others. Maybe everyone who has the time and inclination could try ringing the free phone number, to make sure that the Health Information Service in their area has the RSIA details to hand for enquirers.
I agree that there ought to be some sort of link. I’ve approached the RSIA before on this, without success, but will try again. Would be good if they got online. I’m soon going to have to get a new modem. The 14.4 card could go to the RSIA. Anybody want to donate an old PC to put it in?
Comment 4: Maybe it was just South Wales? They had to ring me back as their computer kept crashing so maybe they weren’t computerised when I rang before. Another option could be the individual support groups could put notices at doc surgeries.